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Sunday, 23 October 2016

Hi,I'm Epileptic

Hi, I'm Epileptic
The sentence that makes people instantly change towards you.
It's a real ball of fun. I won't lie, I do sometimes fuck with people when they get panicky about it. But hey, why have a disability if you can't have fun with it?
I say that, but you kinda don't get to choose if you have a disability or not although it's like some people think you can? I know, mind blown.
I got diagnosed when i was 21. And when I say diagnosed I mean years and years of trying to find out 'whats wrong with me',to suddenly getting a neurologists appointment. To then sitting down, explaining the basics to the neurologist and being told I had epilepsy in the space of 5 minutes. Given a prescription for anti-epileptic drugs and sent on my way. No mention of support, no specialist nurse referral and no 'just diagnosed' information pack.So all in it was a big old kick where it hurts. Honestly it was a pretty fucking dark time for me, I felt so isolated.

Lets back tract a little. I had my first tonic clonic seizure when I was around 7 years old. They were very spars, I could go months or years without having a tonic clonic. I was looked into for epilepsy when I was younger, but was told I didn't suffer with it. So basically.. I was just a strange child that had convulsions sometimes. It happened at school, it happened on Halloween it happened at any time. What I didn't know then and now understand, is i'm lucky enough to get auras(get the blog name now?) before I have a seizure, which normally gives me enough time to get to a safe place and warn anyone i'm with. But unfortunately for me, I didn't understand what was happening when I was younger, which meant I didn't know I needed to go a safe place (normally just get on the floor) so that meant I did actually get hurt when seizing. I even have staple scars on my head to show off from when my scalp needed sticking back together. pretty huh? I've since found out I also suffer with nocturnal and focal seizures.

It wasn't until I started staying at my partners house that we discovered I had seizures in my sleep. Obviously I had no idea, but that also explains all the falling out of bed and hitting my head in my sleep when I was little that I didn't remember. So if it wasn't for him, who knows if I would have had a proper diagnosis!?

Fast forwards to a few weeks after my diagnosis, I had a complete break down at work. I mean it was bound to happen at some point with absolutely no professional help and advise about this massive bombshell. I was extremely sensitive to the medication I had been put on, I was suffering with all the side effects possible and gaining weight quicker than I was eating. I was a complete shell of a person. So all my close friends and family urged me to go back to the doctors. I'm pretty sure you can guess what happened, I was signed off of work and diagnosed with depression. It took for me to get into that state, a breakdown and completely losing the person I was, for my doctor to realise I should have been given more support. I was referred to a specialist nurse, they changed the dosage of my medication as my body couldn't handle it and I was told about support networks that could help me.

In some ways, i'm very lucky with my epilepsy even though the day I was told to stop driving was the day I was going to book my driving test, I can still work, i'm able to continue my day to day actives fairly normally and it got me out of going on all the scary rides at amusement parks.

So, that's my first epilepsy post. There will be more to come.
I'll make them a little happier than this one, but I felt for me to be able to write about this, I needed to be truthful.

Let me know if you have epilepsy or have gone through a difficult diagnosis or still are.

Wow. I'm so sorry you had (have) to go through that! Especially that you didn't know what was wrong - I've been in a somewhat similar situation, so to the extent that anyone can get another, I get this. Thank you for sharing about your experience!

Love your blog post! I also have epilepsy and have felt so neglected from my neurologist! In march my meds had a chemica reaction and my brain had multiple seizure it wiped out my memory so not not only do I have epilepsy but I'm also stuck with amnesia! Continue your writing it's good to read! Feel like I'm not the only one who's had ups and super low downs! X

Very good article. I found this very relatable. I was diagnosed at 20 but luckily I only had to suffer a year before diagnosis, still managed a black eye and stitches though! I've been told not to drive but I live in rural Wales and I can't go anywhere without driving, let alone work. Fortunately my medication has worked without a hitch and I'll be driving legally again. I hope you are able to be properly medicated in the future. It's so cruel to just have this condition through no fault of your own

This was an interesting read. I don't know anyone who been diagnosed with this, now I've got a better understanding if I ever do come across anyone that does. Very brave of you to post and I think it's amazing for others that do have that in common with you as you're such an inspiration. Good on you for posting this and getting the word out there really. You're doing great though, and keep doing you! <3